Press Release

Congressman Chris Smith (R-NJ) will be honored Wednesday evening for his tireless advocacy on behalf of children diagnosed with autism, at the inaugural Autism Gala at the John F. Kennedy Center for the Performing Arts in Washington, D.C.

The gala will be hosted by Autism Speaks and the State of Qatar to draw attention to efforts to assist those with autism, including research, advocacy, and raising awareness. Proceeds of the gala will go to Autism Speaks to support autism-related advocacy and research.

Smith is the co-founder and co-chair of the Congressional Autism Caucus, also known as the Congressional Coalition for Autism Research & Education (C.A.R.E.). He has consistently advocated for more funding to assist children with autism and their parents, as well as for research of autism.

Recently he led a letter to the Appropriations Committee asking them to, in FY 2018 appropriations, fully fund autism programs under the Department of Health and Human Services and authorized by the Autism CARES Act.

He is the author of three bills to assist those with autism and their caregivers: the Autism Statistics, Surveillance, Research, and Epidemiology Act (ASSURE) of 2000, the Autism Collaboration, Accountability, Research and Education (CARES) Act, and the Combating Autism Reauthorization Act (CARA) of 2011.

Below are excerpts of Smith’s remarks for this evening:

“This mom thing is hard,” writes Bobbie Gallagher in her book –The Brick Wall—a highly personal, extraordinarily moving account of an amazing journey raising a family that includes Austin and Alanna—two now grown children with autism.

I marked every page of her book with a BIC yellow highlighter and was amazed—even-awed—by Bobbie’s persistence, wisdom, resilience, and above all her love for her family. Together with her husband, Billy, they are an inspiration to all parents of children with autism.

And they are like many in this room—amazing parents.

Doctors told the Gallaghers not to worry when telltale early warning signs of autism manifested in both Austin and Alanna. Alanna couldn’t possibly have autism, one doctor said; she only needed “a good swift kick in the ass.”

 With that, the Gallaghers began a lifelong search for credible answers and effective, durable, scientifically proven interventions such as Applied Behavior Analysis. 

As prime author of key federal autism laws, I can state categorically that the sweeping changes in public policy and research funding all started with the Gallaghers. Their demand for a comprehensive federal investigation of a significantly elevated prevalence of autism in Brick Township, New Jersey, was the catalyst for new laws that authorized huge funding increases—backed and so effectively advocated for by Autism Speaks—for the National Institutes of Health, the Centers for Disease Control and Prevention, and the Health Resources and Services Administration and the Interagency Autism Coordinating Committee.

Like parents in this room, Bobbie had to manage expectations: “with one simple word like autism,” Bobbie writes, “all dreams of having a ball player went away, and were replaced with the unknown.”

All parents of children with autism face hardship. Bobbie speaks of the frequent

tears, the agony, the sheer physical, emotion, and spiritual exhaustion, and

questions her own existence and that of a higher power.

She tells of the moment when she learned why she was on the earth: “I was here to

fight for children with aurism,” she writes. And like everyone in this room, fight

she has.

She recounts the big moments that she treasures deep within her heart. Like when,

at age eleven, Alanna finally called her mommy for the first time: “It was slow and

deliberate, mmaamee, and it was beautiful.” The Gallagher children, like many,

including Stuart Speilman’s son Zack, aged out of childhood support programs at

21 years old. At that age, they ceased to be minors and were thus rendered

ineligible for education and other programs. She, like many of you, expresses her

shock, fear and dismay over the rapidity of regression she observed in her children

once the support stopped.

It is a credible fear shared by many parents today. Each year an estimated 50,000

children on the autism spectrum  age out, creating a crisis that requires urgent,

rigorous analysis and robust strategies to face this new and largely unmet need. To

that end, and with tremendous support from Autism Speaks, we passed the Autism

CARES Act, that not only authorized $1.3 billion in autism research funding, but

also mandated a government-wide assesment, that we are today analyzing for next

steps, of existing programs to begin the process of addressing the concerns.

Much has been accomplished. So much more remains to be done.

All parents of children with autism face hardship. Bobbie speaks of the frequent tears, the agony, the sheer physical, emotion, and spiritual exhaustion.

She recounts the big moments however that she treasures deep within her heart. Like when, at age eleven, Alanna finally called her mommy for the first time: “It was slow and deliberate, mmaamee, and it was beautiful.”

Or when Austin asked for a cookie—a landmark step toward learning how to communicate his needs to others.

She tells of the moment when she learned why she was on the earth: “I was here to fight for children with autism.”

 And like everyone in this room, fight she has.

The Gallagher children, like many, including Stuart Speilman’s son Zack, have aged out of childhood support programs at 21 years old. At that age, they ceased to be minors and were thus rendered ineligible for education and other programs.

Many parents of majority aged young adults with autism today fear regression—a loss of the progress their loved ones have made.  

 Each year an estimated 50,000 children in America on the autism spectrum age out, creating a crisis that requires urgent, rigorous analysis and robust strategies to face this new and largely unmet need.

To that end, and with tremendous support from Autism Speaks, we passed the Autism CARES Act in 2014 that not only authorized $1.3 billion in autism research funding, but also mandated a government-wide assessment of existing programs  that we are analyzing for next steps—to comprehensively begin the process of addressing the need.

The need is both domestic and international. As chair of the global health subcommittee, I’ve chaired numerous congressional hearings on the challenge of autism worldwide.  Persons with autism—especially in the Least Developed Countries (LDCs)—significantly lag on early childhood diagnosis and interventions.

Much has been accomplished. 

Autism Speaks is making the difference.

So much more remains to be done.